When a child suffers severe trauma or illness that impacts the brain or spine, time, collaboration and diverse medical expertise become key ingredients in a recipe for enhanced outcomes.
At Monroe Carell Jr. Children’s Hospital at Vanderbilt, the pediatric neurocritical care team combines experts from different areas of pediatric medicine to care for each child according to individual needs to maximize that child’s quality recovery.
Pediatric neurocritical care focuses on children who’ve had severe injury and illness affecting the brain or spine. That can include children who have had a severe traumatic injury; children who have experienced acute and severe critical illness affecting the nervous system such as stroke or meningitis; and children who have complex neurosurgical procedures and need advanced monitoring and care postoperatively in the intensive care unit.
“What we do matters in the acute setting, where minutes and hours count and where getting it right and intervening in the right way at the right time really can sort of tilt the scales in favor of a better outcome by preventing ongoing injury,” said Michael Wolf, MD, director of Neurocritical Care in the Division of Critical Care Medicine at Monroe Carell.
Three years ago, every minute mattered for 9-year-old Will Terry, who suffered a traumatic brain injury when he flipped over the handlebars of a kick scooter during a family trip to Florida on May 5, 2020.
A CT scan at a small county hospital revealed a major brain bleed. He was unresponsive, intubated and transferred to a regional hospital on the Gulf Coast. Will was 500 miles from his home in Nashville.
He needed specialized pediatric neurologic and neurosurgical critical care. Complicating his situation, Will was diagnosed as an infant with a bleeding disorder and Noonan’s syndrome, a genetic disorder that can result in abnormalities of physical development as well as the heart. His care team had always been at Monroe Carell. Through a thoughtfully coordinated care plan between the Florida hospital and Monroe Carell, Will was flown back to Nashville for care. The emergency transport team was concerned if Will would survive the flight.
“I knew we were going home,” recalls Will’s mom, Catherine Terry, about the flight to Nashville and to Monroe Carell, “and there was just this sense of peace that we would be with people who knew Will, who I trusted for his care. I just felt like this is where we need to be, and there was no better place for him to be.”
Upon his arrival, the neurocritical care team at Monroe Carell was ready and waiting to assess his condition and treat accordingly.
“After you’ve had a primary traumatic brain injury, the entire point of advanced neurocritical care monitoring and therapy is to prevent further ongoing injuries to the brain that can be a result of that primary injury,” said Wolf. That’s why we have this multidisciplinary team that requires protocols, multiple subspecialists, multiple professions within medicine, such as nursing, respiratory therapy, pharmacy, rehabilitation, many, many different disciplines, that are all aimed at maximizing the outcome for a patient who’s had this primary brain injury.”
In the early days of his care, Will’s condition was moment to moment. There was lots of uncertainty. Will he walk again? Will he talk again? How much brain function would he have? Would he be able to see?
To know, Will first had to wake up.
“We really look for touchstone moments in a patient’s care,” said Lindsay Pagano, MD, director of Neurocritical Care for the Division of Pediatric Neurology, associate professor of Pediatrics, Pediatric Neurology and director of the Pediatric Neurology Residency Program.
Medical care teams often mark improvement by milestones. They do daily neurological assessments to survey for changes, progress or setbacks. Intensive monitoring looks for bleeding on the brain and pressure changes in the skull that can be lethal.
“The blood on the brain can cause swelling. The risk for dying from injury is from the swelling on the brain. Not relieving pressure can have some downstream effects to be able to recover down the line. Your brain doesn’t regenerate, so prevention of another injury is so important for someone to have a quality recovery,” Pagano said.
If pressure is a concern, the team escalates medical management of a brain injury by adding on therapies to hopefully lower the pressure until all nonsurgical options are exhausted. Among the many teams involved in brain care is the Neurosurgery team, including Jay Wellons, MD, MSPH, chief of Pediatric Neurosurgery, and Chris Bonfield, MD, the neurosurgery team trauma liaison.
“For Will, neurosurgery’s Dr. Jay Wellons came in and did a decompressive craniotomy (removal of part of the skull) to relieve the pressure on the brain,” Pagano said.
Wolf added, “In Will’s case, because he has a bleeding disorder, that decision required a lot of thoughtful conversation. And the decision was made do to the surgery because it was our last best hope to save Will’s life.”
Will was in the pediatric critical care unit for 21 days, 17 of which with a breathing tube.
“Right at the end of May, they took out his vent,” Terry said. “We didn’t know if Will knew who he was. He couldn’t lift his arm. He couldn’t give us a thumbs up. He had no function.”
For Terry, a defining moment when she knew her son was still inside involved a dry erase marker and paper towels. Now awake, Will had yet to move or speak. But she noticed a slight reflex of his right hand.
Terry knew he was aware. She scribbled on the paper, ‘raise your hand if you know the name Brooks (his brother).’ Nothing. Again, she wrote, ‘raise your hand if you know the name Callie Grace (his sister).’
“When I wrote ‘Mommy,’ his right hand moved, and I knew Will could process, he could understand,” Terry said.
Will’s stay in the hospital lasted 36 days. Once awake, he worked intensively with inpatient pediatric rehabilitation therapy Kat Hedden and others to begin his long recovery. He went to a pediatric rehab facility in Atlanta for another month.
“This took a village. Monroe Carell is as big a part of our village as anything else. I can’t reiterate enough how thankful I am for Monroe Carell. They truly operate as a team,” Terry said.
Three years later, Will, who still works with physical therapists, loves playing soccer, animals (stuffed and real) and wrestling.
“This is why we do what we do. We focus in the moment on doing everything that we’ve been trained to do to bring the best knowledge, expertise and resources that our institution can offer these families and patients. And at the end of the day, we’re humbled by the fact that these tremendous recoveries can happen,” Wolf said.
Pagano agreed, adding, “What’s so amazing about critical care is that children are so resilient, and they will surprise you in a positive way every single time. When a child who has a very sick brain can, with the right support, the right team and family engagement, recover as amazingly as Will did, that is why we do this.”